vestibular treatment

[claire1]

Hi everyone
I'm wondering if any one had vestibular treatment for balance/dizziness?  If so, what do they do and how long did it take for you to feel the effects of the treatment? Dr. wants me to start next Friday 4/4. He feels it may help prior to,during and after the GK. I'm willing to try just about anything now,but would like input just the same.(covering all bases)
Thanks
Claire A 

[SusanT]

Claire,
I am currently undergoing vestibular rehab. My dizziness is mostly caused by a nystagmus in not just my eye on the AN side ,but in the other eye as well. I had GK 7 months ago and developed increased dizziness and facial paralysis 3 months post GK. I think that it is great that your doctor is getting a baseline before GK. I had no baseline, so the change in my dizziness was scary.  I am being treated by an Occupational Therapist in the Atlanta area. My exercises consist of turning my head in all different positions/directions and then visually focusing on an object. The exercises actually make me feel worse, but I must retrain my eyes.  I am also taking YOGA classes and that has also helped. I have been receiving treatment since Jan 08. Hope this answers some of your questions.
Susan

[Omaschwannoma]

Hi Claire,

I had vestibular rehab after my surgery 3+ years ago and presently am back due to down-hill slide of balance with other symptoms of oscillopsia (vision bounces while walking), nystagmus (rapid horizontal or lateral eye movement), daily headache, and nausea.  Recent MRI showed an inflammation in my inner ear and doctor performed labyrinthectomy through the ear canal.  I was at 80% balance function and dropped to 65% at time of 2nd operation.  I have been 6 weeks in rehab and doing very well.  I do many "eye stabilization" exercises in doors as mentioned by SusanT along with head movements while I'm outside walking my dog.  Outside offers a greater panorama where your senses are taking in more than when indoors.  I will be re-evaluated at the end of this month and am encouraged as my therapist says I am one of her "advanced" students.  Another GREAT help with balance, headaches, ability to cope with my "new little annoyances" has been yoga.  I am an instructor also, but currently on leave until future.  I will be doing these "eye stabilization" exercises for the rest of my life, they take only 20 minutes or so to perform, perhaps 2 to 3 x's a week.  I attribute my good balance before surgery to my practice of yoga.  If not for the yoga practice I probably would've had terrible balance and perhaps this problem would have alerted my doctors to further testing which could have saved my hearing?  Being diagnosed early on is very important to the patient's hearing, facial or balance nerve. 

[claire1]

Susan and arushi

You are the first two people that has nystigmus, the same as me.  I've been so worried because my neurologist didn't seem to concerned. I thought my life was just about over. They (dr's) couldn't tell me WHY I have this.  The nystigmus is billatteral and causes many movement problems from constantly falling down to unable to focus my eyes. I have an AN as well in my left ear. 

What have the drs' told you about why you have this?
I need all the info. so I can healthy process it.
Thank You so much
Claire a

[tony]

By all means do the official therapy as recommended
- but over time almost anything you do at home (that you like doing)
ie ballet yoga etc etc will help
The keys here are 1) slow but steady - dont overdo it
and 2) in a safe and controlled environment
ie if you do fall - it will be a soft landing
Early improvement - weeks and months will be quite dramatic for you
But even 2-3 years out you will be still getting better
The more time you put to this better you will be
Good luck in your recovery
Tony

[Omaschwannoma]

I have been told my nystagmus, different from oscillopsia, was due to the operation when they took my vestibular nerve.  My right side of the brain/balance center did not fully take over the 3+ years post surgery because it kept getting a damaged signal from the AN side; hence, the recent labyrinthectomy.  Once my right side compensates the nystagmus should disappear.  I can only speculate your nystagmus is due to a "weird" signal from the AN side causing the good side to become confused.  Better to have no signal from the AN side so the good side compensates fully.  Hope this answers your question.  This was one of the many reasons I did not go the route of radiation therapy as not only was my balance really off, but my facial nerve too and radiation therapy doctor said chances are it won't fully recover.  I felt my balance nerve and facial nerver were already compromised too much and for too long (many years of misdiagnosis) chances weren't that great for full recovery as others who choose radiation therapy do have great outcomes in this area.  Another reason why our AN journey's and choices for treatment are individual. 

[Cheryl R]

I think nystagmus is not an unusal finding with AN's and even other vestibular conditions.   I had a co workerr with some kind of familial dizziness disease and she had it also.   I have hard it mentioned here off and on.    I had it prior to my first AN and didn't even realize it.        It would be considered a symptom of a disease rather than it being a "disease"           I do have the oscillopsia and am NF2 with having  or had tumors on both side.   I have had 2 removed from one side and will have the one from the other here soon.           
I hope this helps.                                      Cheryl R

[SusanT]

Claire,
I'm not surprised that your neurologist wasn't concerned......He obviously has never had to deal with nystagmus and how awful it can be.  From my reading, there is a "system" called the visual vestibular triad (you can google it). There is  a big connection between our visual and vestibular systems. It is my understanding (and hope) that my eyes need to be retrained with exercises in order to control the nystagmus. I didn't have it before radiation. I definitely want it gone !!!!
There are some good courses/workshops by a company called PDP. I'm considering attending one in July.
Susan

[claire1]

To everyone that has a problem with vestibular balance.

There is a site that has listed all the many test that are performed when in vestibular rehab.  They go into depth about the procedure,the expected outcome and the results of cases that are similar to many of us on this board.
I made a list of them and on Friday the 4th of April will be taking them to my first vesibular rehab appointment. 
CHECK IT OUT;
                         http:// http:www.emedicine.com/neuro/topic693.
Hope it helps
Claire A